Health Care Stories: Student Forced to Discontinue Treatment after $2,000 Tests

Identifying and treating illnesses as early as possible is the best way to prevent further damage to one’s health, but what if the costs associated with proper detection and care are too expensive?  For many this is a reality.  In our health care system those wealthy enough to afford such costly procedures reap the benefits of the quality medical treatment.  Without extending access to high-quality and affordable health care coverage, preventative treatment options and long-term care will continue to remain a struggle for many Americans suffering chronic health conditions like Bennett.  Supporting a public option that lowers costs, provides real competition among insurance and pharmaceutical companies, caps out-of-pocket expenses and expands coverage to the millions of uninsured Americans is the only way to ensure meaningful health care reform.  

“As an HIV-positive man whose illness has progressed to a dual diagnosis of AIDS and PML [Progressive Multimodal Leukoencephalopathy], I know healthcare reform is essential. More specifically, we need healthcare reform with a public insurance option that guarantees access for all Americans to quality healthcare. When I first received a positive diagnosis in 2000, I went to the doctor and had baseline laboratory tests, but after getting a bill for over $2000, I neglected to follow up with the doctor because I was a student in law school using loans to pay tuition and working as a waiter part-time against the advice of my advisors just to get by and get an education and had no way to pay such doctor bills. By 2003, my disease had progressed to AIDS and as a result of my incapacitated immune system, I acquired the feared diagnosis of PML…one of the deadliest opportunistic infections, with only a 16 month mean survival time from diagnosis even in the HAART era…After months and thousands of dollars of physical therapy, I progressed out of my wheelchair and onto a cane and finally began to walk without a cane, but with a pronounced hobble and distorted gait. At that point, I returned to finish my last semester of law school from which I had to withdraw in the winter of 2003. Unfortunately, after completing law school and accumulating the significant debt. I have been unable to find employment due to my disability. Thankfully now, with my receipt of disability benefits, I also receive Medicare for my health insurance and I am very proactive in my healthcare. If I had had access to health insurance when I first tested positive and received the first bill of some $2000, I would have sought timely care which would likely have slowed my onset of AIDS and prevented the occurrence of PML since I would have been regularly monitored and receiving HAART therapy to maintain the strength of my immune system. Although there would be significant costs to insure all Americans, I am a prime example of how these outlays on healthcare at a time when someone is still comparatively healthy could prevent healthcare spending at later stages when it is more costly on services like physical therapy and procedures such an numerous MRI’s, EEG’s, a brain biopsy, and inpatient hospital stays that were particular to my case; the same healthcare spending patterns could be extrapolated to many other cases. Not only would healthcare reform that creates a national insurance program covering all Americans with innumerable medical problems save the system money by treating them at an earlier and often less expensive stage of disease, but it would also save lives and improve the quality of life for those afflicted by medical problems...The same nightmarish scenarios effect people with cancer and all other chronic medical conditions...We cannot wait while countless more die and those fortunate enough to survive live a diminished quality of life.”  

Bennett, KY

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*Please note that actual names have been changed to protect individual's confidentiality.  Media interested in interviewing HIV-positive people about health-coverage issues should contact AFC Communications Director Johnathon Briggs at jbriggs@aidschicago or 312-334-0922.